Rae Lewis-Thornton: A Diva Talks About the Cost of Living With HIV (Video)

"If I had to pinpoint a couple of things that AIDS has really affected," Rae Lewis-Thornton recalls, "it would be my career and, thus, my financial situation." Rae was forced to take a step back from her burgeoning political career when she made her transition to AIDS -- and like many long-term HIV survivors, she didn't think she would live very long so she didn't save money. Now, paying for the meds that keep her alive is a constant worry. "The bottom line is, AIDS is a burden." Watch the other videos in this series.

Inspiring stories of people living with HIV.

Did you ever seek support from support groups?

I tried the support group at County Hospital one day. And honestly, I was so traumatized when I left the support group, I never went back. Because I was at the free clinic; beyond HIV, I felt that I had nothing in common with the women that were there. I'm just being honest.

I've interviewed a lot of people who've felt the same way, about coming from a different background from others in their support groups: If HIV is the only thing that's bringing you together, that doesn't mean that you'll have similarities.

Right. I didn't do anything in those first years. When I made the transition to AIDS, I did private therapy; and then I tried to do group. It was a really short time span from then to my becoming famous. So I had to begin to create a private space for myself.

Especially your business.

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Absolutely. Being so public with HIV -- even at the clinic, if the door is cracked and someone sees me in there with the doctor, they may push the door open and say, "Hey there, Rae. I saw you on TV the other day!" You know, and it's like, whoa.

You can't have that.

I can't have it. I don't have a lot of private space. But you know what? I know a lot of women that love group. It is the one time where people can come together in camaraderie, get hugs and share. I have a support system of friends that I can share with.

How has living with HIV impacted your finances, as far as paying for medication? A lot of people have to be on disability, and can't go to work.

Prior to making the transition to AIDS, I spent my first 12 years in politics and, in those latter years, as a senior staff person. I was the national youth director for both of Jesse Jackson's presidential campaigns. I was climbing the political ladder, so to speak. And I was starting to make really decent money for myself.

My first snag was when I left a job that I was working at to go work for a political candidate in a very high-up position. I lost my insurance and my ability to get insurance. Because most of these campaigns are short, they don't offer insurance to their staff; they just pay you. When I went back to try to do not-for-profit work, no one would insure me. So I lost my insurance. That's how I ended up at County Hospital.

But when I made a transition to AIDS, I was expected to die. The life expectancy was three years. We could see progression toward death -- and so, of course, I applied for disability, which was a lot easier back then to get on. You know, you get a disability check. I was on SSDI (social security disability insurance), which is the system that you pay into.

"People see me on TV and see me in magazines; and they think that's glamorous. Well, first of all, all press is free. ... I got a thank you letter for being on the cover of Essence magazine."

I got a disability check that, even though it was more than what people would usually get with SSDI -- because I had paid into the system; I'd been a working woman all my life -- it still was nowhere near what I was accustomed to. When I went on the speaker circuit, obviously, I did make good money. But I spent more money than I made, because I thought I was dying: "What the hell, who needs savings?"

It's been a hard life. People see me on TV and see me in magazines; and they think that's glamorous. Well, first of all, all press is free. That's the first thing. I got a thank you letter for being on the cover of Essence magazine. I do the work, not to be on TV; I do the work to deliver the message. And so this has been really, a really hard life. It's a hard hustle getting people to pay you to speak. I've gone through periods where I didn't know where my next meal was going to come from, or how I was going to pay my rent.

In the last three years, I've had to downsize my life because I was hit very hard by the economy. I went from a three-bedroom to a studio. My prayer was, in that second year in that studio, "Lord, can I please just have a one-bedroom? Because I can't look at my bed anymore."

Health insurance is still tricky. My medicine is about $8,000 a month with Medicare Part D -- which is the plan that George Bush put into the system. My copay is $2,400 a month. Thank God there is a system in Illinois that pays my copay. I worry about that, because that was put in under [former Illinois Governor Rod] Blagojevich, who went to jail. And so a lot of his policies are being shifted.

There is a possibility that I may have to foot a $2,400 copay a month. And ADAP (AIDS Drug Assistance Program), the way it works: If you qualify for Medicare Part D, ADAP will not insure you. And then with ADAP there's a waiting list in many states anyway. So I become a catch-22 there, where I don't quality for the national and state federally funded ADAP program that gives you HIV meds, but I qualify for Medicare Part D ... but it doesn't pay.

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